Sunday, April 27, 2014

No More Names: The Clarence Family Tragedy & The Violent Trend That Must Stop

This kind of déjà vu is the kind that makes my stomach sink. Another story about innocent people with disabilities murdered by a caregiver. Tania Clarence, a 42-year-old mother from Britain, is accused of killing her three children with spinal muscular atrophy (SMA), twins Max and Ben, and daughter, Olivia, all under the age of five. Sadly but not surprisingly, the media coverage focuses only on how "devastating" the neuromuscular disease is, how much physical care the children needed and how burdensome that care is for the non-disabled without mentioning how devastating an act of violence directed at innocent children is. See the story here  The cycle has to end.

A hideous crime is a hideous crime regardless of if or not the person killed had a disability. Had the same crime been committed against able-bodied children, the article would've taken on a much different tone. However, with the coverage of a murder of a disabled child comes the underlying societal assumption that these lives did not carry the same value as others and don't matter as much when they are taken away. We have to stop presenting murder as an acceptable and even natural response to people with disabilities. I am not denying that supporting a person with a disability and living with a disability can be extraordinarily difficult, but we cannot use that as an excuse to turn to violence. Murder is murder, period. The justice system cannot let off some and not others based on the perceived value of the lives they took away.

I regret that this mother felt so alone that this seemed like the only solution. However, her loneliness and despair cannot be used to justify three lives snatched because they were reduced by society to nothing more than a list of medical needs. Life with a disability is so much more than that. In many ways, our lives are very difficult, but ultimately, we deserve to be treated as another aspect of a diverse human family. Many of our difficulties arise from ableist assumptions about what kind of life "is worth living". That is not a decision for our non-disabled peers to make. The lives of people with disabilities belong to them, and no one should have to live in fear of someone else deciding that he or she is better off dead. This is me, a person with a disability who is not so different from Max, Ben, and Olivia telling you not to write us off. If we continue to allow our story to be told by people who can only see it with fear, judgment, and pity, horrendous acts of violence will continue unchecked, stealing away bright lives under the cloak of mercy.

We live in a very sad world if those who require more help, more time, or more patience can be eliminated without the public outrage afforded to all other victims of violence. Many of my friends have SMA, and continue to live full, rewarding lives. They go to school, have friends, and have families. They have dreams worth fulfilling and lives worth living. They are not suffering from SMA. They are living with it, and they have a beautiful perspective from which we can all learn.

What saddens me as well is that the article said nothing about who the children were as people. They were merely described in terms of bleak medical jargon. I sit here and wonder what their favorite foods were, what they wanted to be when they grew up, what songs they liked to sing, and most hauntingly, how afraid they must have felt when the woman chosen to love and protect them slaughtered them. Yes, they had disabilities…. But killing them cannot be excused, much less disguised as an act of compassion.

Those looking to be compassionate should devote their time to improving our broken service systems, getting people the quality care they deserve, and reminding the world that people with disabilities have rights. The attitudes that classify us as less worthy lives challenge us more than our bodies ever will. Our lives are our lives, and no one has the right to dismiss them.

To Olivia, Max, and Ben, I promise you that I will keep fighting until the day no one has to go through this ever again. I want to live in a world where people with disabilities like us can grow up proud, unapologetic, and embraced with the same enthusiasm as any other. You were not and are not lists of medications, sleepless nights, or burdens like some have suggested. Your names are Olivia, Max, and Ben, and you are people. People who had so much left to contribute to the world, had you been given the chance. I pray that one day we will all be together in Heaven, where I will give each of you a big hug, and remind you how glad I am that you once graced the planet. Sleep tight, little ones, I love you so.

Check out these great individuals with SMA living beautiful, meaningful, WORTHY lives.

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